I'm Aware That I'm Rare: the phaware® podcast

A new podcast series devoted to raising global pulmonary hypertension awareness with dynamic stories from PH patients, caregivers and medical professionals from around the world. New Episodes every Monday & Thursday!

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Dr. Dunbar Ivy discusses the work of the Pediatric Pulmonary
Hypertension Network, (PPHNet)
on the network's 10th anniversary. PPHNet is a network of clinical
specialists, researchers, and centers bringing a collaborative and
multidisciplinary approach to improving care for children with
pulmonary vascular disease.

Hi, this is Dunbar Ivy. I'm Chief of Pediatric Cardiology at the
University of Colorado School of Medicine and Director of the
Pediatric Pulmonary Hypertension Program at Children's Hospital of
Colorado.

I'd like to talk to you about the Pediatric Pulmonary
Hypertension Network [PPHNet]. It's our tenth birthday. When we
first started the network, we were a loosely associated group who
had strong interest in pulmonary hypertension. Our initial goals
were to learn how to treat patients better and to develop
guidelines.

Over the last 10 years, we've been successful in some areas and
challenged in others. I think our successes have been in the
development of some guidelines, particularly for pediatric
pulmonary hypertension in general and also for children with
bronchopulmonary dysplasia, diaphragmatic hernia, and treatment of
pulmonary hypertension in a group of patients with prematurity and
pulmonary hypertension. Our group has been very involved in the
World Symposium of Pulmonary Hypertension in driving recognition of
pediatric causes of pulmonary hypertension in the classification of
pulmonary hypertension and to our adult colleagues, because as we
get better at treating children they're going to become and are
becoming adults, and our adult colleagues need to know and
understand these unique causes, these developmental causes of
pulmonary hypertension.

I think the next frontier is helping the regulatory agencies and
industry to define how to study these medicines in children to the
benefit of the physicians, the families, the regulatory agencies,
so that we can do a better job of knowing how to use medications in
children. We've been very fortunate to have an extremely
collaborative group and the senior members of the group have very
much felt that we need to support our junior colleagues in their
professional careers. That makes for a collegial environment. When
we have an idea that comes up, then there's a discussion about who
wants to take the lead and people are very supportive of spreading
out the ideas. An example would be a genetic abnormality called
TBX4 that was initially discovered to be strongly associated with
children with pulmonary hypertension in the Netherlands and our
group has taken that and then people have contributed their cases
where they found this. We found that it's a cause of persistent
pulmonary hypertension of the newborn, so this helps clinicians try
to figure out why a baby may have PPHN. There is no direct targeted
therapy for that, but I think it's an example of how the group has
worked together for the common good.

I think the next frontier is to expand the group. There are more
and more people with a dedicated interest in pulmonary hypertension
and this will allow for better treatment of children across the
United States and Canada because it's hard to travel. I think the
network will expand and that will allow us to enroll more patients
in our registry and then have more expert care throughout the
country. That will, I think, be an important goal.

About the Podcast

A new podcast series devoted to raising global pulmonary hypertension awareness with dynamic stories from PH patients, caregivers and medical professionals from around the world. New Episodes every Monday & Thursday.
Through this series of impactful, insightful and, most importantly, hopeful stories from members of the global pulmonary hypertension community, we hope to further the global #phaware conversation as well as to capture, engage and enable misdiagnosed and undiagnosed PH patients because early diagnosis and treatment can mean the difference between life and death.
Topics range from the importance of early diagnosis and global PH awareness, to the impact of clinical trials to how patient support and advocacy are paramount to battling this disease.
Learn more about PH at www.phaware.global